We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a Los Angeles woman with Ehlers-Danlos Syndrome.
When you fall down at least once a week, you learn to laugh it off. No matter how much it hurts, you laugh because you know it makes other people more comfortable with what’s going on. If they believe you’re all right, your story is a comedy rather than a tragedy. I’m quite sure that this lesson I learned as a child (and have called on hundreds of times since) had a big part in my decision to become a comedy writer and performer, a career I began a decade before I was finally diagnosed with Ehlers-Danlos Syndrome.
Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show... My joints hyperextend, which is great for sex but terrible for JV soccer... I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.” Once engaged, people are much more likely to find some aspect of my condition that interests them and ask about that. This type of light interaction is far more comfortable than feeling like I’m teaching an NIH seminar on some disease nobody cares about.
In my experience, the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses. Just after my diagnosis, I was so confused and in so much pain that I was relatively curt with medical professionals. I also thought that if I even smiled, they would think I was faking my illness. But once my symptoms started to improve a bit and I understood more about what was happening, I tried being open and jovial with those who were treating me. The result was great; it should not have come as a surprise that a doctor who likes his patient is more likely to pay attention to her. Regardless of how badly I feel or how much I think something devastating may be happening to my body, I now try my hardest to make whatever dumb jokes I can manage in the hospital or at the doctor’s office. The staff members, many of whom somehow make it through day after day of maudlin events and miserable people, respond quite positively to my Tommy Boy quotes and ridiculous metaphors about how the exam room smells like a robot dog’s pee. (In fact, I would like to think I get better treatment because of David Spade.)
The need to laugh off my issues has become so innate that it is now my first response when I go into shock. My old roommate loves to tell the story of when I stepped onto our back porch and it looked like a sniper hit me: I was down in an instant. She ran out to see what was wrong and found me laughing hysterically, screaming, “I’m fine! Everything’s fine!” When I saw her worried, maternal expression, it made me even more afraid; I knew I had to alleviate her concern for both of our sakes, so I kept up my laughing and made jokes even as the unbelievable pain set in. As it turns out, I had ruptured my Achilles tendon and torn my calf muscle so badly that the orthopedic surgeon said it looked “like pulled pork; like a zipper went down the whole thing from top to bottom.” Looking back, I laughed and joked to make my roommate think everything was fine - the way you would treat a toddler who fell down and looks to you to gauge the severity of his injuries - but really I was the toddler, and making myself laugh got me through it.
I do not know where my life would be without my love of comedy, nor how I would have made it through the ups and downs of Ehlers-Danlos Syndrome. When it comes to relating to people, passing time in the hospital, or just convincing ourselves that there’s a lighter side to almost every situation, the most important part of the human body is the funny bone.
Paula Dixon is a comedy writer and photographer based in Los Angeles. She is a graduate of the USC School of Cinematic Arts and the Spéos Institute of Photography in Paris. She will be returning soon with her humorous podcast The Chronic Life, which covers chronic illness as well as pop culture and personal revelations.
Photo by bruna camargo